Schizophrenia Survey Analysis: Living with Schizophrenia

No single symptom signals schizophrenia. Any one of its symptoms also can be found in other mental illnesses, such as bipolar disorder or Alzheimer's disease. Observed over time, however, there are three types of symptoms that, in combination, may result in its diagnosis.

Positive, or "psychotic," symptoms include delusions and hallucinations. These are symptoms that occur because a person "loses touch with reality" in certain situations. Negative symptoms include emotional flatness or lack of expression, an inability to start or finish activities, and lack of pleasure or interest in life. "Negative" does not refer to a person's attitude, but a lack of characteristics that should exist. The symptoms can resemble those of depression. Cognitive symptoms involve impairment of "thinking" processes, such as prioritizing tasks, organizing thoughts, and certain kinds of memory functions. For more medically reviewed information about schizophrenia, please visit www.nami.org/schizophrenia.

Diagnosis takes time. In clinical practice, symptoms generally need to be followed for at least six months. But neither time nor the illness wait for a diagnosis. The survey found the following:

Almost five years elapse between symptom onset and diagnosis of any kind of mental health condition. The average age of onset was 20.5 years old, with males generally experiencing symptoms two years earlier than females, and the average age of any mental health diagnosis is 24.5.

Schizophrenia is a disease that usually strikes at the threshold of adulthood--when young men and women in their teens and 20s are in school, entering the workforce, beginning families, or making other formative choices.

It has life-changing consequences, which can include lost or damaged relationships, disability, academic failure, unemployment, dependency, isolation, physical illnesses, jail or prison, and homelessness.

The survey offers evidence of diminished social and economic prospects even when a person receives treatment:

Two areas of engagement increased for people diagnosed with schizophrenia: 38% report greater connection to religious or spiritual practices and 34% report an increase in volunteering-while 30% and 32%, respectively, report decreases.

The survey responses provide a sketch of what it is like to live with schizophrenia, but they reflect the experience of only a special population: 95% of individuals with schizophrenia who participated in the survey report that they are receiving treatment. In contrast, among the total population of people living with serious mental illnesses like schizophrenia, approximately two-thirds live without any treatment. For them, life is even harder and grimmer.

Approximately 60% of people with schizophrenia die prematurely from heart disease, diabetes, or other conditions. This is a startling fact when considered alongside the following survey findings:

Nearly all say that access to a psychiatrist (95%) and medication and treatment (96%) are most helpful to improving their condition. A vast majority (93%) also believe that more effective medications and treatment, as well as better private health insurance (85%), would help improve their condition.

A large majority believe that access to housing (88%), having a job (76%), and transportation (72%) would help improve their condition.

These are supports and services that can help a person overcome the symptoms and consequences of schizophrenia. They also facilitate access to treatments for other health conditions. They reflect needs that support individual dignity.

How much is society willing to pay to improve the public health system to help 2 million Americans who become ill through no fault of their own? Inevitably, potential support is related to public attitudes.

Schizophrenia does not make me any less of a person than anyone else. It does not mean my life is over.

I think the most important thing is to accept the disorder like any other medical disorder; that treatment works and that recovery is not only possible, but probable as well.

I think the most important thing is that family, friends, and the public should have awareness and understanding of schizophrenia.

It is a disease that can destroy your life. Families can and do turn their backs on you. The public doesn't care. Your government doesn't care. No one cares. If there is a hell, having this illness has got to be the greater part of hell's acreage.

I want people to know that I am just as intelligent and compassionate as any other person and that I am not a danger to them.

My health insurance has a co-pay of 50% for mental health services but only $10 for physical health services. I can't move out of my parent's house because it costs me $350 a month just for therapy, the psychiatrist, and medication.

It is biological and could happen to anyone. As a caregiver, you need to gather your strength from the love you have for the person you are caring for. .

Prepare to be challenged by the disease, the person, and the system.

It is easy to burn out when there is no support, understanding for yourself or your child. Compassion is essential for what they are going through. Knowledge about the illness and the medications are the only thing that helps cope with symptoms.

Caring for a family member is a life-changing and never-ending process. You must remain ever vigilant and expect difficulties in accessing necessary and appropriate services. You must also take care of yourself.

The public needs to fully understand schizophrenia first before people can begin to grasp the toll this illness takes on the individual affected by this disease and the physical and mental strain experienced by family members...